Living with symptoms, diagnosis and treatment of Graves Eye Disease (Thyroid Eye Disease) and Hyperthyroid--What to expect, questions to ask, and more.

As you read, remember this . . .

All of the information I write about is based on my personal experience. As I have lived it. I hope the information you find here is useful, informative and educational. Remember, please don't use the information you read here as a substitute for your personal medical care or professional medical advice.

Track

September 2012

I wanted to let everyone know that the annual Graves' Disease & Thyroid Foundation Patient and Family conference will be held in San Diego this year, at the Kona Kai Resort & Spa. I went last year (Boston) and am registered to attend this year.

For those of you considering attending, I highly recommend you attend this conference if at all possible. The planned speakers are experts in their fields who deal day-in, day-out with Graves' Disease. It's a tremendous opportunity to learn more about Graves' Disease, interact with expert medical professionals, and importantly ask one-on-one questions specific to Graves' Disease or your unique situation.

I've stayed in touch with people I met at last year's conference which has been very beneficial to me. In addition, I've looked back over my conference material, and all of my notes, from time to time to refresh my memory on certain aspects of Graves' Disease (you can find my notes here on my blog that I posted last year, just look under the education/seminar link to the right).

1) The Methimazole worked a little too well, I became HYPO-thyroid by a long shot and now I'm down to a low dose just 3 days per week, instead of 40 mg twice daily about six weeks ago. The slight heart "flutters" (which normally precede the palpitations) are back so I'm taking a very low dose of Propranalol.

2) I was scheduled for my thyroidectomy surgery October 3rd. I just cancelled last week. My labs are fluctuating too much (for me anyway) even though my endocrinologist said I should be ok. I'm not ready plain and simple and when my labs are normal for some time I'll revisit. I can always reschedule but once my thyroid is out, you can't put it back in!

3) The Graves' Disease & Thyroid Foundation is holding their annual patient and family forum October 26-28, 2012 in San Diego, California. I just registered to attend. It will help me tremendously to talk with patients who have gone through surgery. Then I'll be ready for a permanent decision.

I found this meme from the Facebook page of the Graves Disease and Thyroid Foundation page, which is also from the invisibleillnessweek.com site. I thought it was a brilliant idea, so I'm copying it here to share with all of you. Here goes!

Even when we have known a person for decades there are still things we can discover about their daily life with chronic illness. And when we learn a bit more about what something is they love to hear, or what their morning may be like, it can help us be more compassionate to all of those around us who are suffering in ways we may not have noticed.

You never know what you may have in common with others around you.

Thank you for participating and spreading the word.

30 things about my invisible illness you may not know.

1. The illness I live with is: Graves' Disease2. I was diagnosed with it in the year: 2005 (Nov)3. But I had symptoms since: At least 1 year prior, maybe more4. The biggest adjustment I’ve had to make is: Learning to forgive the insensitivity of others having been exposed to so much more of it through illness5. Most people assume: there is nothing wrong with me6. The hardest part about mornings are: the tough ones when I couldn't sleep all night7. My favorite medical TV show is: Currently, Dr. Oz and The Doctors8. A gadget I couldn’t live without is: My iPad!9. The hardest part about nights are: when my labs are off the chart in the wrong direction, I know I won't be able to sleep, when I lie down the heart palpitations/skipped beats prevent sleep altogether. I pray for normal labs.....10. Each day I take __ pills & vitamins. The usual suspects, that is my anti-thyroid medication + vitamins.11. Regarding alternative treatments I: don't have any expertise in this area12. If I had to choose between an invisible illness or visible I would choose: with Graves' Disease I have both because of my ongoing eye issues.13. Regarding working and career: Tough one. Any chronic illness will change you. How people perceive you changes too, especially in the work place. There is judging without understanding.14. People would be surprised to know: I'm stronger than you ever imagined a person could be.15. The hardest thing to accept about my new reality has been: there is no cure.16. Something I never thought I could do with my illness that I did was:look for positive outlets to help outhers (my blog, volunteering)17. The commercials about my illness:no commercials on Graves' Disease that I'm aware of.18. Something I really miss doing since I was diagnosed is: Graves Disease is always in the back of my mind. It's inescapable. I've love a day where I could forget my illness altogether. Merely taking medication in the morning is a constant reminder, even when I'm feeling great.19. It was really hard to have to give up: the notion that I would enjoy excellent health forever!20. A new hobby I have taken up since my diagnosis is: blogging21. If I could have one day of feeling normal again I would: jump for joy22. My illness has taught me: 1) everyone is suffering from something, it's just a matter of what and to what extent; 2) to care less and less about what others think of me; 3) to unconditionally love myself as I am and 4) there is a lot of ignorance and intolerance in the world.23. Want to know a secret? One thing people say that gets under my skin is: "you don't look sick" or "just get a good night's sleep."24. But I love it when people: phone me out of the blue to see how I'm doing.25. My favorite motto, scripture, quote that gets me through tough times is: You never know how strong you are until being strong is your only option.26. When someone is diagnosed I’d like to tell them: You are not alone.27. Something that has surprised me about living with an illness is: how judgmentgal some people can be, how compassionate others can be, and how much I had taken for granted (every day things).28. The nicest thing someone did for me when I wasn’t feeling well was: offer to pick up chicken noodle soup and bring it to my house and to just sit with me for awhile. Two other friends offered to fly in from out of state to support me. 29. I’m involved with Invisible Illness Week because:I'm helping to increase awareness of chronic illnesses.30. The fact that you read this list makes me feel: like you may have an invisible illness too, or you may know someone who does, or that you care enough to learn more to get all through the way #30!